Posts Tagged ‘cancer’

So yesterday, Sunday morning I was listening to On the Media, an NPR program, which was doing great piece on Black History Month. Then, they played this recording of Lucille Clifton reciting her poem, won’t you celebrate with me. While I in no manner can relate to what it is like to grow up black in the United States, I could completely relate to this poem from a “sickness and health cancer-living” perspective. Since this is my cancerversary month (yes, it was a month, exactly from the day when Cindy Parke, CNM, said, “Hmmnn, I don’t like the feel of this” to receiving the results of a mammogram and subsequent biopsy) I thought I’d post this. Tell me what you think.

POEM

won’t you celebrate with me

by Lucille Clifton

won’t you celebrate with me

what i have shaped into

a kind of life? i had no model.

born in babylon both nonwhite and woman

what did i see to be except myself?

i made it up

here on this bridge between my one hand holding tight

my other hand; come celebrate

with me that everyday

something has tried to kill me

and has failed.

I have spent a LOT of time this past year, “my one hand holding tight my other hand”. I cautiously, and with a bit of fear of being premature, celebrate the fact that something that has tried to kill me has, so far, failed.

This is not a position I applied for, but it appears it is a job the universe has given me for the time being.

This is a short story about vegetables, cooking, the Farmer’s Market, and one Farmer in particular.

Andy's vegetables, Toledo Farmers Market, January 2010

I have always LOVED going to the Farmer’s Market. I loved Farmer’s Markets before they were cool, even. As a little kid I remember going “to Market” with my dad a couple times and with my Aunt who sold eggs once as well. This would have been back in the early 60’s, and then it was only called “Market”. I guess it wasn’t necessary to include the occupational code term of “Farmer” at that time. I loved the many diffeent sights, sounds, the early morning, and most of all the people. All different types of people that this little farm girl didn’t normally see around Cygnet and Hope Lutheran Church, my two social outposts of childhood. Well, I still go to Farmer’s Markets now, and they have changed. Now it’s cool to get your food at an open air market and to speak a few words with the grower of the goods. I LOVE to browse the fresh food, and I love to talk with the growers. Some talk a little more, some a little less. My favorite guy is Andy Keil from Swanton. This big bear of a guy is always at the market, always has a big smile on his face, and since I have begun my trip into cancerland, has always asked about me. Here is a sample of our conversations this past year: Andy, “How’re ya doin’?” me: “oh….pretty good…” usually followed by a brief explanation of what’s happened recently or what is to happen next. The conversation always closes with Andy saying, “Well, you know I’m still prayin’ for you.” And me, the true Unitarian, I always reply, “Thanks Andy, I’ll take all the prayers I can get.” Because of course, if there is a Holy Trinity up there somewhere, I’m pretty sure I’m not on the “save” list.

Farmer Andy and me at Toledo Farmer’s Market, 1/31/10

Well, this week Andy had a little sense of urgency in his voice when he greeted me. “I was hopin’ I’d see you here, because I got something to ask you.” “Sure Andy, what do ‘ya need?” I replied. “It’s time to return the favor for me. You know how I always tell you I am praying for you? Well…..” and he went on to tell me of a very recent medical appointment that ended with a surgery date coming up very quickly to remove a suspicious tumor and adjacent tissue. And when he was given the bad news, he said, “You know, you were the first person I thought of.” I really felt kind of honored, in a wierd kind of way. I told him that personally, I really think tumors suck, and I hope that he is one of the lucky ones to not get admittance into the cancer club any time soon. We chatted for a few more minutes about how he is way too busy growing food for me to get sidelined with this surgery and treatment business for too long, and I was really glad he is proactive about his health, and taking care of the important business of living life.

Of course now I have to get busy with the praying part. So I did today. At home on Sunday afternoon, my son, Louie, carefully peeled the parsnips and carrots and I did the turnips. I then chopped them up into slightly larger than bite size along with the red onions and a potato, threw a few homemade frozen “pesto cubes” on top and then opened a can of Dei Fratelli chopped tomatoes to add a nice liquid base with beautiful tomato pieces. The whole while thinking of Andy, and hoping that his great Karma and good nature will get him through the surgery he has scheduled in about 10 days. This is basically a big pan of vegetables that will last about five days in my house through all my lunches at work and a few dinners at home, also. Now I can’t help but think of Andy when I pull out my veggies. This is how a “foodie” prays. Or at least this is one way I see “prayer”.

Dinner Sunday night, Andy’s veggies, Trader Joe’s Brown Jasmine Rice and Brown Rice Medley (and yes, I am drinking that wine!) Of course, this is a lot of vegetables, and I cook this way to streamline the food “prep” through the week. My new favorite food thing is prepping five individual containers of “chow” for the week to have healthy and filling lunches every day without having to do a thing, except pull it out of the fridge…….

This is such a good lunch, I can’t even begin to explain. But I do think of Andy now whenever I pull out his vegetables….and when I think “ummmm, this is sooo good!” I am saying a prayer that my favorite farmer is back in the field this Spring, and not in a Medical Complex someplace decoding a whole new world.

Thank goodness for those who have travelled this road before me. When I was first able to utter the word “biopsy”, it was to my friend Kathy, who had been there before with Breast Cancer. When I started thinking about my mastectomy and how to recover, I was so grateful that my Chinese sister, Helen, spent hours on the phone with me. When it was apparent I was about to lose my hair, Cathy and Diana loaned me their wigs and hats.

I’m truly grateful that Andy asked me to pray for him, even if I’m not a very good pray-er. Gives me a chance to “pay it forward”. If you are good at praying, you got a direct line to Jesus and God, would you put in a good word for Andy? He so very much deserves it. I want him to keep showing up at the Farmer’s Market for many years to come.

Yes, I know I haven’t posted in awhile and thank you for calling to see if I am OK, but it is just that the fatigue of four chemo’s is real. When Dr. Schott said the effects of chemotherapy is culmulative, she wasn’t kidding. Actually, she (and NP, Joan) were so right on all their predictions, that I will just believe them completely from now on.

This fourth round of chemo hasn’t been as horrible as round three was, but still, itchy hands and feet, no hair, searing hot flashes, fatigue, and bone pain. Good news on the bone pain though, if you eat ibuprophen like candy, it is actually bearable. I took Joan’s recommendations this time and have been downing multiple Motrins at very regular intervals, whether I have pain or not, and it is working pretty good. No collapsing because of intense and sudden pain this time around. Countin’ my blessings however small they may be!!

The hot flashy thing is a trip though. Last night (for kicks) I recorded each time I was wakened when I voilently threw off the covers and dove for my water bottle. My bedside post-it note pad has the following times recorded;

11:00pm, 12:24am, 1:53, 3:30, 4:19, 5:46,

and then a little break…7:30am

Then, all day, I only had two, maybe three hot flashes. Whats’ up with that? Why does the body save the fireworks for the overnight hours? So they can be seen against the night sky? Is this some kind of sick entertainment for extraterrestials we are not aware of??? (I have chemo-brain…….I’m allowed to go off on whacky tangents.) If the body seeks balance, this does not seem to be the way to do it.

As if that is not enough…

I am still trying to process all that was said during the last U of M visit as well, namely the option of participating in the “Phase III Trial of Bisphosphonates as Adjuvant Therapy for Primary Breast Cancer” Clinical Trial. I am trying to find non-fatigued time to do some independant research on this, but the basics are: Bisphosphonates seem to strengthen the bone, and in previous studies of women who did not have chemotherapy, they provided a 30% better chance of NO relapse of breast cancer (in the bones, a common place for relapse of BC apparently). Sounds good, right? But, not so fast….. there is this whole world called “risks/benefits” analysis……of course bisphosphonates as a drug/adjuvant therapy have risks, as well, and one of the risks is osteonecrosis of the mandible, and to a lesser extent the maxilla. (I think this means death of the jawbone.) Of course, this occurs in a small percentage of the people who take this drug, but enough that my dentist wants to talk to me about it before I sign up….so back to the tooth man next week (again). Part of me really wants to go for this one, because a recurrance of cancer in the bones just sounds so….much worse. Can’t really just cut ’em off like we did with the breasts. And if my jaw bone goes south, well that’s bad I suppose, but not as bad as dying from bone cancer, right? I really hate these life and death decisions….I’d like to go back to deciding what kind of wine to have with dinner.

Just being able to have wine again will seem like a gift. As soon as that mettally-mouth thing goes away, I’ll have another small blessing to count.

Tomorrow I get to meet the Radiation Oncologist, Dr. Rubin, for the first time. I have heard wonderful things about him. I sooo hope I like him and his recommendations. I’ll let you know here first.

Yuk. Once again. Fingers ache, vertebrae seem stunned, feet and hands itch, horrible metal mouth, searing heartburn, all complements of chemotherapy. In addition, just as my Oncologist predicted back in June, I have a new side effect: hot flashes….except they are not timed to infusions, I think they are here to stay. Apparently when you are my age, chemotherapy throws you into menopause whether your body is ready or not. I guess I am thankful that I can at least semi-function for an hour or so at a time….but I really have to think about what it is I intend to do. I sure do hope this is the last time I ever have to endure chemo, but of course, you know I think about all those stories I have heard…..from the survivors themselves, of relapses, and more treatments.

Can’t write anymore right now. Each time I begin a new paragraph I sound too pathetic.

Last night Lou and I saw the movie Julie and Julia. It was great, especially Meryl Streep’s portrayal of Julia Child. Wow! WOW!WOW!!! And all the food………..ohhh my goodness. I loved it, loved it, loved it!! When I woke up this morning, I couldn’t stop thinking about the food. And then I realized just how much, how terribly much I miss “the food”. I think one of the things I have missed the most this summer is not being able to COOK. Oh, I can kinda’ cook. I can make a basic dinner with convenience foods and a few fresh ingredients. I have enough stamina to make it through the grocery store, and get the food into the house. I have enough strength now to be able to get the Caphalon pans off the rack and onto the stove. But I have discovered, I must keep it all very simple, or else I run out of steam before the dish is done. I can’t even tell you how many beautiful bunches of basil have been denied the opportunity to become a perfect pesto because they wilted into oblivion in my fridge before I had the opportunity and energy to put the simple recipe together. And the swiss chard, especially the rainbow chard…sighhhh…I just felt so so bad, and so sad to throw several bunches out over the last couple months. Beautiful rainbow chard gone to waste is a terrible thing. I have started with great intentions, and think a recipe through carefully, plan around what I anticipate will be “my good days” purchase the ingredients ahead of time, and somehow it frequently hasn’t happened, but certainly not for lack of desire or will.

I also miss strength and stamina. Just pulling four dinner plates out of the cupboard takes effort. Actually I can’t even do that, it’s more like two at a time, and even that is not all that easy. Closing the back door of the minivan…that hurts, too. Even pulling weeds out of the garden requires planning, have to save that for the “good days” and all I can manage to evict then are the shallow rooted invaders. This lack of upper body strength makes me feel so oldwhen I have never felt old before. I am working really hard to continually, everyday, try to do a little more, but it seems like I take two steps forward, and then one, and sometimes two steps backwards. The lymphadema issue on my left side, that is a real thing. So, I guess I really miss those lymph nodes, too. All these years I have taken them for granted….well no more. I’m grateful for all the lymph nodes I still have left. You should love your lymph nodes and appreciate them for all they do.

I miss fearlessness. I didn’t realize until this year, how relatively fearless I have lived life. In fact, I don’t think I really experienced much fear until I had babies. When I had babies, they came with “parent fear”…if you are a parent you know what I am talking about….the fear that something, someone, some unknown factor will hurt your beautiful and perfect child. Of course, “parent fear” comes and goes with the news stories of the day or the shriek of a child….. But now….geez…cancer……somehow it invites itself into your tissues and divides uncontrollably. Then, if you are lucky like me, you find it before it reallythreatens to kill youand get it in a body part that is non-essential (sorry about that breasts), and a good surgeon can “cut it out”. But you know what they can’t cut out? That nagging fear that some how, some rouge cancer cell snuck out of the core tumor and has been hiding from the chemotherapy, is out of the line of fire of radiation, and just waiting to make a ‘comeback”. The small discomforts of normal aging now make you think with a paranoid edge. Could that nagging backache be something bad happening in my bone marrow? How many times have I had that little pain in my head….and has it been in the same spot….and maybe I should mark it with a “Sharpie’ so I can keep track of it…maybe I should make a log of the times I’ve felt it….. I don’t know how to find the balance between merely paying attention to my body and being paranoid about every little thing, little pains I feel. I don’t like it much, being paranoid.

Yesterday I made a trip to Office Max to buy one of those rolling cart things for when I do eventually return to school (hopefully by the mid to end of September) because, of course, I’ll probably not be able to actually carry stuff back and forth like before. While in the cashier line, I saw this pretty teenage girl, I kind of didn’t recognize her at first…and realized it was Emily, a quiet and thoughtful student I had in my class for two years in a row. Boy, over the summer she has grown, looks more mature. I chatted with her and her mother for a few minutes as we all walked to our cars. I put my bags in my car, got in, and surprisingly and uncontrollably burst into tears. Wow…what was that all about? I think I just miss teaching, I miss my school, I miss the camaraderie of my teacher friends and fabulous secretaries, but most of all, I miss the kids. Seeing a student really hit me right in the emotional gut, I’m not where I am supposed to be right now. I am supposed to be in the classroom, with all the ups and downs of teaching, it is all about connecting with kids, and helping them learn and grow and become more mature. And I’m missing it. Yea, I know I’ll get there, but today I’m missing it.

There’s lots of other things I miss too, like having free time. I’m sick of taking every available moment to study my treatments options, filling out medical paperwork, researching medical facilities and doctors, etc. I know that it is shallow and only temporary, but I miss my hair. In air conditioned rooms, my head is cold. With cooler temps finding their way to Ohio, my head is cold. I miss planning anything. I always have to think, well, if I am OK on that day I can….. I hate having to live one day at a time. People who tell me to just live one day at a time don’t actually have to live their life that way. It is easy to say, very hard to do. I miss taking “feeling good” for granted. I didn’t realize how most of my life I always felt good. Now, when I feel good, I really notice it and appreciate it so much.

Sigh. I’ll quit whining now. At least for today, I get to go hang out with the Unitarians. And that is something to be grateful for.

Well, it is Monday morning, and it is the first day of the new school year that I am missing work. Well, not a student day, but a Teacher Inservice day. This is one of those work days that some teachers quietly grumble about, but I love teacher work day. Seriously. I love going in, and being PAID to sit and listen to whatever it is my administration thinks I need to know. So this whole cancer odyssey that began way back in February….is going to mess up another school year for me, or at least the beginning of the year.

I went to the ER of Flower Hospital yesterday as recommended by the Oncologist on call at U of M. They called my yucky hot and itchy rash a drug reaction, gave me a shot of epinephrine and some meds to take at home. So far, I only see a slight improvement in the worst areas, but overnight my hands and wrists have swollen and are uncomfortable. I am really starting to worry now that this condition can not possibly be gone by the next infusion date, 11 days away. If I am refused my last infusion, that will just set everything a week behind, including returning to work. I don’t think I’ll be able to handle that.

I so much want to just feel normal or whatever my “new normal” is and I want to feel like I am taking part in normal life things. I don’t like what my daily life has become….it has been a summer of constant research into what is the best decision to make, how to best live with unpleasant side effects, how to avoid the worst side effects, and how to just live through it all. All the while trying to put up some kind of front of “normalcy” …….. pretending to be just fine, when I’m not really. I look forward to the day when I can be cheery and really feel like it.

So after five days, I am finally able to listen to the tape of my visit to Dr. H, Radiation Guy at U of M. It doesn’t really help much.

I had pretty much over the weekend decided to stop whining so much and just suck it up and at least take a positive attitude about the whole radiation thing. But listening to the tape of the consultation, well….you tell me what you think….here are a couple direct quotes:

“”you fall into a grey zone regarding the rules of radiation after a mastectomy” and “there is a lot of discussion in the literature amongst the experts of what is the right thing to do in this setting, because there are some downsides to doing the radiation” . Neither one exactly inspires me to jump up on the table and get into position.

On the other hand….I just want to be the best patient I can be, be informed, proactive and do everything in my power to rid my body of these despicable cancer cells. I just keep thinking about seeing Louie and Charlie graduate from High School, and then if they choose, college, too. What can I do to ensure that I get to see those things? Is it choosing radiation as part of my treatment plan??

Lou and I have been reading so much about this. Looking for original studies, information prepared for the layperson, and talking to people who have been through it, and dammit there really is no clear cut answer.

Over the weekend I was surprised to see on BREASTCANCER.ORG : Radiation may be recommended if four or more lymph nodes are involved OR for premenopausal women, at least one lymph node was involved. hmmnnnn this is the first time I have seen the “premenopausal” clause…..I guess this is because if you still produce estrogen, it provides food for the cancer cells (if your cancer is estrogen receptor positive, that us.)

Wednesday

Had three good visits today. First, I had a “Healing Touch” appointment with Veronica at The Victory Center. As usual, it was insightful, calming, relaxing. She is great, and reminded me (again) to come from a place of unconditional love, and to (again) live in the moment. To ask the universe the question and wait for the answer. I already know all of these things, but at this juncture, I need someone to remind me of them. I really need a Veronica in my life about every other day or so right now.

Saw Dr. Barone, my Plastic Surgeon for my last expansion on my right side (150 cc’s). To all of you outside of Ohio….wow, too bad you can’t see this big girl. She’s a beaut in a round-expansion implant-kind of way. I’m thinking I gotta be careful about bumping into things until I get used to my new perameters! Only thing is, I really got to step up buying a boob for the left side, because I am lopsided in a really dramatic way now. God, I hope they don’t have to special order them. I hope the boob store just has them “in stock”. Guess that should go on the “to do” list this week right after I figure out how best to keep living. But on the serious side, Dr. B provided the time for a serious talk about cancer options, specifically radiation. I really appreciate this doc for his time and willingness to talk, and look me in the eye when he answers my questions. Plus, he has the best nurses ever. And, he has the nicest office staff, too. Thanks Suzi for taking additional time with me today. It meant a lot to have that additional conversation. You are the greatest!

Last good visit was with BFF Tahree. We just talked, drank wine, visited a neighbors’ garden and then out to dinner. What a good pre-chemo evening, to talk to other “girls”.

Thursday (tomorrow…or by the time this posts, today)

Get records for second opinion. See Geeta, U of M Physical Therapist Extraordinaire. Blood work. Appointment with Joan, NP and Dr. Schott, Oncologist. And if I’m lucky and blood work is good, chemo at 3:30. Send good energy my way…..I’ll be in Ann Arbor..

Today I went to a Retina Specialist as suggested by my eye doc last Thursday. Good news is no big-deal-bad-problem…… This guy dilated my eyes, poked around just enough to be a tiny bit freaky, and then said, all looks OK, but be aware of the signs for retina and/or vitreous detachment.

Do you know the signs for a vitreous detachment? They are: flashes of light, a large number of “floaters”, or black spots in your field of vision. Also “shadowing” of vision, like if a curtain has been pulled over your field of vision is a symptom of Retina Tears. If you ever notice these symptoms, especially if they seem to come on suddenly, it is important to call your Doctor immediately, even if it is a weekend. A retinal detachment can be very serious business.

Not something I thought I’d be thinking about in the middle of chemotherapy, but lucky for me, it was a “false alarm” of sorts. Just something to keep an eye on. (A little opthalmic humor……keeps my boat afloat!)

Now lets hope the Radiation Oncologist has the same kind of news for me on Thursday….I want them to say, “no way you need radiation!” because that will mean I’m almost done with the “active” phase of treatment. I have all my fingers and toes crossed….won’t you cross yours too?

What a good day today! Began with a massage at The Victory Center (TVC). While I was there, I had the good fortune of running into one of my “adopted” Chinese sisters, Helen and her brother, Tom. If you have heard me talk of Helen before, let me briefly explain this relationship: soon after I was diagnosed with breast cancer, another friend suggested I call Helen as she (and her sister) had both recently been through the Breast Cancer Roller-coaster ride. I eventually did call, and we immediately bonded. There is nothing like having someone to talk to who is open and willing to share. There were so many questions I had that I never had the time to ask my doctors, they would have never answered them anyways, but Helen did. We spent hours and hours on the phone, and she allayed many of my fears. Thanks, Helen, for giving me peace of mind when I needed it most.

Then, later in the afternoon, I accompanied Kelly, the director of TVC, to a speaking engagement of the most lovely group of women I think I’ve been around in a long time. Now, I hope I get this title right….they were the National Association of Colored Business and Professional Women. (If I have written that incorrectly, please comment on this blog and I’ll make the correction right away.) First, Kelly spoke about what TVC is, and then I spoke about my experiences as a mother and caregiver, suddenly being in need of “care-giving” and how TVC has played an important role in my acceptance, connection to others, and recovery from the treatment of BC. Surprisingly, I was a little nervous…..this was the first time I have ever spoken in front of a group about my personal story. I speak in front of people all the time as a teacher, but teaching a Junior High School class (which I lovelovelovelove!!!!) and speaking about “me” are two completely different things.

Well, let me tell ‘ya, I couldn’t have picked a better first time audience if I had tried. These women just exuded acceptance, understanding, and compassion. Wow-what a great group of women! They were encouraging, and so very sincere. When I finished my small part of the presentation, Kelly returned and explained in more detail how TVC functions, and how they serve any cancer patient free of charge. We then fielded questions and comments from the ladies, and they were so incredibly kind! It was just a “love-fest” of niceness all around, and lots of prayers sent my way. Thank you ladies, so much for making my day wonderful!

For more information about The Victory Center, please go to: www. thevictorycenter.org BTW, the massage I began the day with was lovely!